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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Ziva

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  1. I just thought my eyes got tired toward the end of the day because I wear contacts. Maybe still the case. I don't notice my throat or mouth being dry. I'm not going to think about it. I think I have the food down pretty good. We don't eat alot of processed foods and usually have a meat, veggie and salad for dinner and I take leftovers for lunch. I do think I'm on information overload!! I appreciate all the info I have been given.
  2. I always thought I was a little weird We haven't done any genetic marker testing on anyone else. I'm not really sure it would be worth it. I only did it because the GI doc said no to Celiac and he wanted it to rule it out further. I guess in his mind it gave him one more reason to say no. Thanks for adding the links, but they were greek to me! My husband was diagnosed as Celiac as a toddler, but until it was mentioned for me, we didn't know you don't outgrow it. His tests came back negative, but he is gluten free with me.
  3. I have read the info on antibody tests several times and understand it a little more each time I read it. Thanks My generic marker test said what I posted earlier plus HLA-DQ (DQA1*05/DQB1*02) negative HLA-DQ8 (DQA1*03/DQB1*0302) negative HLA-DQA1* 01 HLA-DQA1* 03 HLA-DQB1* 0301 HLA-DQB1* 0603 Does it say something different than negative?
  4. How long of a learning curve do we get ??? I went back and read some previous responses and it said something about TPO antibody test. Guess I picked up on the T3 & T4 from somewhere else and requested them. So, with my recent thyroid test results, do I need to go back and request more blood work?
  5. Quess I don't know how to do the mutli quote, yet! Thanks for the reply. Are you saying that the recent thyroid tests I had done are not enough to rule out Hashimot's? At least for right now. My test through Quest said: "The patient does not have the HLA-DQ varients associated with Celiac Desease" As I work on getting my other daughter tested, I might be a little smarter. My TtG IgA was <3. They did not do the Ttg IgG in my blood work. My IgA, quant was "normal" and my antigliadin ab, IgA was 13 - high (11-17 equivocal). My daughter's TtG IgG was 9.3 - high (>9 pos) and it was the only positive she received. They did not run a full panel before she went gluten free. My mistake, when the GI said "classic Celiac" after our initial visit and biopsy, before the pathologist's report, I figured I didn't need to request additional celiac bloodwork. According to our GI docs neither of us have Celiac.
  6. She was biopsied and he again said "classic Celiac" as she was recovering from endo, but would have to see what biopsy showed. She went gluten free and we went for a 3 week follow up after endoscopy and the GI doc did a flip flop to No Celiac because biopsy was "normal". He went with IBS and said she could eat carbohydrate light. She feels better although not too happy about being gluten free at 21, but she is willing to stay gluten free. I'm so glad I've been reading on this forum, learned how much doctors don't really know and not to listen to all they say! Her doctor is at least willing to entertain the idea of staying off gluten if it makes her feel better.
  7. Celiac And B-12

    I am relatively new to Celiac and am trying to figure out what this all means for me also. I didn't know there was anything wrong with me until Dec. when a GI doc mentioned anemia during a routine colonoscopy at 50. As I have read more about Celiac, I can say I can identify with some symptoms and defiantly have some absorption issues resulting in anemia, Vit D and recently told of B12. On Wedn. I was put on weekly B12 shots for 24 weeks. I thought weekly seems a little different than what I heard others say, but I'm going to give it a try. My husband was put on the same amount but once a month. Different doctor than mine. From what I have read, it seems the shots are the best way to go because of the absorption issues with people with Celiac. I'm sure all people are different, but I had the impression that once off gluten and your intestines heal, your body would then absorb the nutrients and you wouldn't have to stay on the shots. As I said, I am new and learning as I go. Good luck to you
  8. I'm not sure if I can change the heading to something like...Been around for a short time, and still need input from those who have been around awhile! I had follow up appt with hematologist that believes I have Celiac. Even though GI says no. I had blood drawn the week before so he had results. The thyroid tests were: Doctor said these are fine. T3 uptake 30 - normal (22.0 -35) Thyroxine (T4)- 7.1 -normal (4.5 - 12.0) Free thyroxine index 2.1 - normal (1.4-3.8) TSH 1.27 - normal (.40-4.5) There is also a T3, free, pg/Dl 3.1 - normal (2.3-4.2) Can I have some input on what this might mean for me? If I'm gluten free will the symptoms get worse or does the progression stop? Sjogren's antibodies (SSB)1.4 Pos - abnormal Sjogren's antibodies (SSA)<1.0 Neg - normal ANA Cascading reflex interpretation - This finding suggests Sjogren's syndrome. Anti-nuclear ab titer 1:40 - high (1:40 neg, 1:40-1:80 Low antibody level, >1:80 Elevated antibody) Found out I'm also low on B12 and am going to start weekly B12 injections for 6 mths. Is weekly normal? Any input is helpful. Thanks
  9. On Friday, I went with my 21 y/o daughter to her 3 week after endoscopy follow up appt. The doctor totally changed his diagnosis from "classic Celiac" after our initial appt and endoscoy findings to No to Celiac because "the Golden Standard" of biopsy was not met. He now says the ttg IgG result that was 9.3 was not really high. (<6 neg, 6-9 - weak positive and >9 positive) Only test she showed high. Looking back, I don't see where they did the IgA quantity. Can I say we are VERY frustrated! He didn't seem to take into account that she seems to feel better 3 weeks gluten free. No ear infections, decreased bowel problems, more regular bm without added fiber to name a few things. Also had no explaination for her anemia. He is now going with IBS and wants her to take lubiprostone / amitiza and do a stool test for blood. Also said she should "modify" her carbs but doesn't have to eliminate them. It looks like that medication could have some unpleasant side effects! Anyone else take that medication? Any input? I'm thinking she is going to skip the medication for now and continue eating gluten free. Right? Do the poop test for blood. Is 2 months eating gluten free long enough to see changes in blood work for anemia? So frustrating! Good luck to the other posters on this thread regarding your results. Seems like you really have to go with how you react to foods because you may not get confirmation from the doctors.
  10. My daughter had her endoscopy & biopsy done and the GI said definatly Celiac. He said he would send off the biopsies and let us know if they show something different. What he said seems to go along with what I have read on this forum. I think she may have a doc who knows what he is doing! We also talked about the genetic marker test, hopefully I put that right. When I told him mine was negative and done through Quest, his comment was "there you go" and would prefer Prometheus. I appreciate any input I have received since this is all new to me and I need to know what to request from my doctor. On to the dumb question... several have said I need more thyroid tests than just TSH. Confused why. I did some reading and I don't see the symptoms of thyroid problems. With Celiac being an autoimmune, wouldn't that be why the ANA is positive? I can say all I have are the above test results, some trouble sleeping but not all the time, floating poo, but definatly better now off gluten, heart palpatations at times but not all the time, hot flashes sometimes. My hair, nails, energy, weight, skin, sensitivity to hot / cold are all normal. What am I missing so I have something to go to the doc with.? In 2011 - TSH was 1.80 miu/l - no reference range and in 2012 it was 2.25 with "normal" being .47 - 5.01 uu/ml. Thanks again
  11. Thanks for the replies. The only test for thyroid was the TSH. I will request more thyroid blood work @ my appt. the 1st of May. I am a bit frustrated with my doctors. I have showed anemia for several years on my blood work but it didn't raise any flags with my pcp other than telling me to take some iron. I thought he knew what he was doing and I didn't know any better! My GI doctor has dismissed me to come back in 10 yrs for a colonoscopy. Believe I will find another one by then. The hematologist is the one who says I have Celiac. I called his office yesterday, to ask about thyroid test and h. plori. He wants me to take the 3 antibiotics for the h. pylori. Wish they would have called me and wanted me to do something rather than me calling them. Thanks again
  12. I still have a few questions and would apprciate any input. Look at previous post for other tests results. 1. If the only test I showed any increased number to was Antiglaiden ab, IgA at 13 (11-17 equivocal) is that enough to say Celiac? Neg on biopsy and neg on genetic marker. Anemic and Vit D insufficiency. See above. 2. My daughter was tested and the test done was Gliadin , IgG & IgA - normal and TTG IgA normal and TTG IgG High at 9.3 (<6 neg, 6-9 week pos, and >9 positive). Biopsy scheduled. Should I request more blood work or is the one area enough to say Celiac? Reading up on Celiac, she has more outward symptoms than me. Attributed some problems to Asthma and diagnosed with IBS this summer. Because she is young and I want to make sure before she spends her life gluten free and we can still do more blood tests. 3. What does it mean when H. pyloria, IgM is abnormal? Thanks
  13. I spent the day wondering what was wrong with me. I've had heart palputations before but today had them off and on almost all day which was not "normal" and very unsettling. I got on here to see what others had to say. I'm new at eating gluten free and am taking iron and Vit D. The iron is causing some issues so I was taking Citrucel, says it's gluten free, and 60 calories per tablespoon. Tried the sugar free which contains aspartame. Didn't think about it containing the same thing as Crystal Light which I also react to but not as bad as today. Reading the posts made me realize what the sugar free was. Hopefully this feeling will go away soon.
  14. Very interesting! I could say I relate to more of the symptoms of menopause than to Celiac, but based on the conversation, I can't wait to see if going gluten free will reduce the heart palputations, night sweets, and hot flashes. Just new to gluten free and possible diagnosis of Celiac.
  15. If "some" of the genes associated with Celiac are negative, what are the chances you are Celiac? I don't necessarily need a formal diagnosis of Celiac, but I need to know if this is the answer to my Anemia and Vit. D deficiency. Otherwise, I need to look at other areas. Can gluten sensitivity / intolerance cause deficiencies? My doc only ran the tTG IgA, IgA, quant, and Antigliadin ab, IgA. The Antigliadin being 13 which was high. (11-17- equivocal)All other were "normal". Early on when I posted someone said the Antigliadin was specific to Celiac, but of all the tests I have done, it is the only one high. If you are gluten intolerant rather than Celiac, could that affect this number? Thanks